So I'm new to this forum. I'm here for myself, but because someone I love has lupus. I'm not really sure what else to say, so I'll just cut through all the bs and get to the point. I need advice.
I was born with my own genetic issues, a muscular malformation of my eyelids. Nothing that shortens my lifespan or compares to lupus. I've had over a dozen surgeries. It's painfull on a daily basis but something I can deal with. I'm only 25 and am constantly told I'm an "old soul" because of everything I've been through. This being said, I recently fell in love with a girl who has lupus. I hate to say the cliche, missery loves company, but we find comfort knowing that we understand each other, and our pain, on some level. She is one of the few people who brings a smile to my face. The problem is, I'm committed and she isn't. She dosent want to hurt me in 5 or 20 years when she dies. To me it won't matter. It hurts just as much to lose her now, or after a lifetime. I keep telling her how I cherish every moment we have. Because thats all we have. And she still stays distant from me. I have all the patience in the world for her, because it's all I can have. But how do you guys deal with this issue? I'm sorry to hit what must be a sore subject so bluntly.....
Also on a rando tangent I recently saw a man was cured of aids/HIV from a bone marrow transplant. What does this mean for lupus? Can lupus be cured by the same method.
Thanks for any and all advice....
Welcome to WHL and you've joined a great family with so much help and advice to give so you won't go short of help and understanding.
Sorry to hear you yourself have gone through so much and how you met this young women you both sound very compatable and if she makes you smile there's so much going for you both and why she thinks she may not be around in 5-20yrs god knows.
Lupus is helped with advanced medication's for different condition's and it's rare someone dies, Lupus is not a disease you can cure but with the right medication to help the system, your life can extend a good while.
I suggest you talk to her about it and what you read from the threads and try and hold in there mate because if you love her and she feels the same, she's worth fighting for even though you've gone through alot yourself.
((Hugs to you Terri)) xxx
Hi and welcome to WHL. i am so glad that you found us. It is very, very rare that people die from Lupus anymore. That usually only happens when someone stops taking their meds for whatever reason. Please lead long, productive lives with Lupus now. There really is no reason for anyone to put off their life because they are going to die. Just ask people here who either have had it for decades or whose parents have lived to old age and they will tell you. This doesn't mean that there are not bad days (or weeks ) but they can get things worked out and she can get stabilized. Maybe you could give her some information from the Lupus Foundation of America or simply have her sign up here. I believe if she learns a bit more about what is going on with Lupus now she may feel better planning a life for herself.
i have been diagnosed for the about 2 years, but suffered for over 30.
lupus rarely kills nowdays. people die from the complications. not the desease itself.
if lupus is effecting the heart, and you stop taking medication, you could die from heart failure.
if lupus is effecting the lungs, and you stop taking medication, you could die from lung failure.
stay on the medication and you should live to a good age.
please learn more, having lupus does not mean you have to stop living.
Welcome to the family, I wish I can give you some tips but Terri and Mari said it all. Just be there and listen.
Welcome MinioN! You sound like a very caring person with a generous heart, despite your pain. I hope that your friend will appreciate the gem that she has before her. You have gotten wonderful advice from others here. The only thing I will add is the suggestion that you maybe take a step back and give her a little room to deal with this new situation. She may have convinced herself when she was diagnosed with lupus that she could never fall in love, or that no one would choose to be with a lupus patient. Your love for her may be messing with the mental image she had of what her life would be. You can be there with your friendship, support and encouragement. She is incredibly lucky to have someone in her life who cares enough to approach a group of strangers and ask for help on her behalf.
Originally Posted by MinioN
There is research going on at the National Institute of Health in bone marrow transplants in people with life-threatening lupus. As others have said, lupus is rarely fatal anymore, but people still become very ill from organ damage. I couldn't find anything on how the research is going, however. Something in the back of my head says that the initial people treated were essentially "cured", but that they had to be on death's door to get into the study because bone marrow transplants are so risky. There are several researchers working with stem cells in hopes of finding a cure for lupus, so there could be a dramatic change in treatments in your friend's lifetime. I myself am in a drug study of a monoclonal antibody that is showing a great deal of promise for some lupus sufferers.
Hi minioN, boy can I relate to your girlfriend! When I found out I had lupus, I stopped dating my boyfriend who truly just wanted to help me and love me. I believed horror stories about the disease. As I adjusted and learned, I went back with my boyfriend(smile)
One day I stood in a grocery line and met an 84 yr old with lupus. she was diagnosed at 40. I went home ecstatic! I was sick in my 20s. I am 53. I take my meds religiously.
Hope this helps. Oh for the record, it was patience on my boyfriends part that made me take a risk of loving again. Hang in there and let her adjust to the new her. Keep up the good work!
I hope your doing fine since you joined...plus your day is less pain free. xxx
Sorry for the long period of no reply. I've been traviling a lot. So we are in a relationship now. From what I've figured out, she dosent have health insurance and is too stubborn to accept my help. She is very independent, which is something I like about her. I'm worried that if I get onto her about the way she lives she will push away, yet at the same time am worried about her health. The relationship is slow going, and it's definitely to soon to push or nag.
What's the best way to go about getting her to help herself without nagging? I can only show her he door.....
It's really hard to have someone you care for refuse your help, but there is only so much you can do. My feeling is that the only thing you can do is continue to offer your friendship and support without being judgmental about her health choices and without pushing her to rely on you. She may feel overwhelmed by her health and financial issues and simply not have the emotional energy for more. I know when I don't feel well I tend to withdraw, even from my family. While I appreciate it when my family offers me help, it also reminds me that I need help and that is a downer. My gut feeling is that you need to give this lady some space and accept her the way she is. Maybe she will grow to trust you to help her as time goes on.